We Are Invisible

The response to the articles entitled The Loss of Femininity (July 3, July 10, 2009) has been overwhelming. There were so many women who identified with “Alice” as she felt less and less like a woman, as she was forced to take on traditional male roles in order to care for her husband. So many well spouses wrote to me expressing how they too no longer have the desire to dress up, wear makeup or even care for their health. Care giving has stolen everything from them, and for some even the desire to live. And, like Alice, most well spouses became invisible to family and friends who long ago stopped offering help, seeing these women not as people or women, but just as caregivers.

Dear Ann,

I wish I could express how much your article impacted me. In all the books and articles I’ve read over the years about care giving, and even with the many other caregivers I’ve talked to, I’ve never seen that topic addressed. And I think that not addressing it is sort of like ignoring the elephant standing in the living room.

Years ago, when we went to sign my husband up for social security disability, I was appointed to be trustee of his disability money. He said that he felt like that was the beginning of his being a non-person. I didn’t know it then, but it was also the beginning of my becoming a non-person. As a caregiver, you’re not supposed to get tired or overwhelmed, or care that your life has been completely altered in so many ways. You really do become a non-person, a sort of neutered individual whose only role or purpose in life is being a caregiver. It’s like all of society sees you as “caregiver” now, as opposed to a person in your own right.

If you try to tell someone how difficult, or tiring, or discouraging, or lonely it is to be a caregiver, you are likely to get a question like, “You mean you mind caring for your husband? You don’t want to care for him?” No, that’s not what I mean. It just means that caregivers are human, too, and they could use some help. But until other people see that we need help, or we finally get their attention by begging for help, we remain invisible.

Isn’t it strange the things we become accustomed to? I heard a story about how if you put a frog in very, very hot water, it would struggle and fight to get out of the water, and would try until it succeeded or became too exhausted to continue – but if you put the frog in cool water and just gradually turned the temperature up, it would calmly sit in the water until it boiled. I think too many caregivers have been sitting in that hot water way too long, and have not noticed that they are now just about cooked all the way through.

Thank you again for an article that I intend to share with as many caregivers as I can.

Jan Hournbuckle

Dear Ann,

After reading your article this morning and writing to you about how much it affected me, I shared your article with someone who was not a caregiver. Their comment was so shocking, that I wanted to share it with you. They read your article, and then said, “Didn’t any of the husbands help her?” Didn’t they help her push the wheelchair through the snow, or clean the snow off her car, or help lift the wheelchair into the car? If this was a social visit, you would think that perhaps the host might think of helping her…”

The thing that shocked me the most was that, as a caregiver, I didn’t even see this very obvious question. It took someone who was not a caregiver to point it out to me. I am so used to struggling alone with these things that it didn’t even occur to me that a reasonable person outside the situation might think that someone should offer to help.

Some further comments:

On the lack of offers of help:

“With my experiences Ann, people do help him. Me, on the other hand, well that’s another story.”

“What about being all dressed up in my good clothes and having to take the walker out of the car and helping him into it? (and) driving off after leaving him in the warm building while I parked the car with my jewelry on hoping I don’t get mugged.”

On visitation and respite:

“His family said they’d (visit him) if I make dinner. Great, I’m really in the mood to cook a dinner and then and only then will (they) come.”

On self-care:

“I really simply feel like a caregiver and not a spouse. I haven’t done my nails since who-knows-when. The worst part is that I simply don’t care.”

“When you wrote in this article ‘some have actually told me that their neglect of their health is their cowardly way of speeding things up’ (meaning their own death) you could have been writing about me. I run to the doctor with him. Myself, on the other hand, forget about it.”

It is my fervent hope that, after reading these reactions, anyone knowing a well spouse will take a second look at them and the lives they lead. Helping them in small ways, seeing them as a person and not just a caregiver can do more than you know. It may even save their lives.